June 3, 2011

It's been a while since I posted, because there hasn't been a whole lot to tell.  Casey continues to be having a remarkable recovery.  He had his port removed, his liver function and sugar levels are very close to normal.  Things are going better than I could have hoped.  Casey and his cats  have moved back into his house.  Casey took his swimmers to a meet in his beloved Chapel Hill, and they swam great.  Last weekend our whole family spent Memorial Day weekend together at the beach.  Life is good!  I never realized how good, nothing going on could be.  Happy Summer.
Peggy 

April 21, 2011

Today is the 5 year anniversary of Casey's leukemia diagnosis.  I remember when the doctor told us we were looking at a 3 year battle, I thought he doesn't know Casey.  He will have this disease beat in a couple of months.  Here we are 5 years in and still fighting.  I don't feel sorry for having to go through this for 5 years, I feel  very lucky to still have him. after what I have seen what this disease can do. 
Casey is doing really well.  To see him you would think he is a normal healthy guy with no hair.  He just got home last night from the Olympic Training Center in Colorado Springs.  He was out there for a coaches clinic with some of the best swim coaches in the world.  Other than the plane trip out and his obnoxious roommate, it was a great experience.
Happy anniversary Casey!
Love,
Mom

April 6, 2011

Casey has had a great week.  His appointment with his eye doctor went well on Monday.  She said everything is stable and does not have to see him for 6 months.  The appointment with his oncologist also was great.  He does not have to go back to him for 1 month.  Casey was hoping they would schedule a time to take his port out, but they are not ready to do that yet.  It gets in the way of his golf swing, and the warmer weather is making him want to get out on the golf course.  (The port is the central line which was surgically placed in his chest with one tube going into his heart and the other into his jugular.  It makes it easy to draw blood and administer IV fluids).  I really do have a miracle kid.  Thank you for all of your prayers and well wishes.
Peggy

March 31, 2011

It's amazing how quickly things are turning around.  Casey is doing great.  His blood counts are better than they have been in years.  He is back at work and was at Virginia Tech this past weekend coaching sectionals.  On Monday he has an appointment with his opthamologist (Dr. Neely) and on Wednesday he sees his oncologist.  During his hospital stay, his eyes were pools of blood again, but Casey kept assuring the hospital staff that Dr. Neely will take care of it (this was happening while he was hallucinating). I think he thought she was in the room with him, along with a bunch of kids who kept making a lot of noise, swimmers, Aunt Debbie's little friends and a helicopter.  His room was quite full.  Last time we went to see Dr. Neely, Casey got out of there without having any procedures done and his eyes looked better than they had in years. He didn't have to go back for 6 months.  (Casey has had a vitrectomy and surgery for a detached retina, along with several laser treatments.)  I am going into the appointment very optimistic.
Next week we have 2 great check-ups to look forward to.  I will keep you posted.
Peggy

March 22, 2011

Things have really changed in a week.  Casey is doing great.  He went to High School states on Saturday afternoon and back to work on Monday.  High school states was a really fast meet, we saw state and national records broken.  Congratulations to everyone who participated, you showed all the other states PA is a powerhouse. We were in the lobby talking to somebody, when the people running the meet came up to me and gave me instructions about entering with the handicapped people.  I was standing with bald and skinny Casey the cancer patient, and Gary, and they singled me out as disabled.  I had to explain to these people twice that I am perfectly able to enter with everyone else.  These last couple of weeks must have been a lot rougher on me than I realized.  Gary and Casey did not let that one go.  Thank you Betty and Erik for getting us the tickets.
Casey is headed down to Virginia Tech (Gary's alma mater) this weekend.  He is getting a ride with the parents of his swimmers. I think Gary is a little disappointed that he doesn't have to take him down.
Tomorrow Casey has an appointment with Dr. Ehmann.  Hopefully his diabetes and liver are getting better. The improvement has been so great this past week that I should be satisfied, but there is always hope.
Peggy

March 15, 2011

Dr. Ehmann called Casey this morning to tell him the results of his bone marrow biopsy.  All Clear, no leukemia blasts in there!!  I can't even begin to try to put into words how happy I am!!  Hope your day is going as good as mine.
Peggy

March 14, 2011

Casey came home on Saturday evening.  He is feeling good, but real tired.  We went to Hershey for his check-up today.  His blood counts came back good.  He had a recordable ANC count, and they did another bone marrow biopsy.  On Wednesday he has an appointment with Dr. Ehmann,  For now he is resting and looking forward to watching the basketball tournament and high school state swimming.
Peggy

March 11, 2011

Casey got the word.  He can come home tomorrow.  The plan is to do another bone marrow biopsy on Monday.  I sure hope all of this graft vs. host has killed off all of the leukemia.  Things are pretty much under control.  His liver took a real hard hit and he is getting insulin injections, so he won't be drinking any beer for a while.  Hopefully all of that comes around once he is at home eating decent food, getting out of bed and moving around.  The past two days Casey has improved in leaps and bounds.  I am looking forward to having him at home.
Peggy

March 10, 2011

Today is a really good day.  Casey is feeling much better, is able to stay awake, talk and eat. They are even talking about letting him go home sometime soon.  Today is Annie and Bowie's 2nd birthday.  We will celebrate when Casey comes home.  I saw a neighbor (Chris) down in the cafeteria who was taking a dinner break while waiting for his wife to give birth to their first child.  Actually his parents are our neighbors, and he grew up with Casey.  It is so nice to see someone in here for a nice occasion.  Tomorrow is Chris's birthday, I think he is hoping his wife is in labor for another 4 1/2 hours.  I think it would be nice for the baby to share the puppies birthday.
It's time to get ready to take a walk, which includes having Casey put on a mask, unplugging his IV and making sure his hospital gown is tied shut in the back.
Peggy

March 8, 2011

The hallucinations have stopped, but they have left Casey feeling wiped out.  They have removed his TPN (which is his food through an IV) and are trying to get him to eat on his own.  That is not going too well.  Nothing tastes right.  Yesterday he got a pack of cards made by his swimmers.  We enjoyed reading them.  The knock knock jokes were pretty lame, but they really made me laugh.  We also heard from turd bird, poop stain, and diarrhea.  I noticed a trend (I think his swimmers are full of something!).
Each day is getting a little better.
Peggy

March 5, 2011

I have not posted for a couple of days because Casey wanted his swimmers to focus on themselves and not him. Great job to all of the LAC swimmers at districts.  Casey has been paying attention, but we have taken his phone away from him.  The fever has finally gone away, but one of the medications he was on caused him to hallucinate.  He was responding to text messages with some pretty bizarre comments.  He was coaching people on their swimming techniques as they came into his room.  My sister stopped in yesterday and he told her she needs to do a flat start instead of a track start.  He had patient sitters with him around the clock.  When the new on arrived this morning, he told her to stay to the right and don't false start.  So Casey was with you guys in his own little world.  The hallucinations have stopped now and his sitters have been released.  The doctors feel his problems are due to graft vs. host disease.  They took him off of his anti rejection medications prior to his last dose of chemo.  Between the chemo and no meds, there is a fight between the donated cells and the leukemic cells going on.  He has had 2 bone marrow biopsies.  The results of the first one showed the leukemia is still in there, but the numbers were greatly reduced.  The results of the second on were pretty much the same as the first one.  They are encouraged by the graft vs. host, thinking it will kill off all of the bad cells and they will not have to do the mini transplant.  Things are starting to look up.
Thank you for all of your prayers and support.
Peggy

February 27, 2011

Casey went to his usual appointment this morning.  His fever was up while he was there and they were not able to get it back down.  He has been admitted back into the hospital again.  The fever keeps going up and down.  Hopefully they can figure out where it is coming from and get rid of it.  One of the tests included having a cotton swab pushed way up his nose.  He didn't like that one.  Hoping tomorrow brings good news.  I will keep you posted.
Peggy

February 26, 2011

Casey was able to come home from the hospital on Wednesday afternoon.  Before releasing him he had a bone marrow biopsy and we are still waiting for the results from that.  He has not been feeling great, his fever is up and down, but not up to the point of admitting him back into the hospital.  Today he went along to take the dogs for their walk, and then we went to Chelsea's rugby game.  That was my first rugby game, it was a tournament so the game was only about a half an hour long.  Just about the time I was beginning to figure out what they were trying to do, the game was over.  I'll have to go to another game sometime soon before I forget what little bit I learned today.  My nephew, Derek (who played rugby) was there and was explaining things to me.  I will need him again too.  What an odd, but entertaining game.  All of that has wiped Casey out.  I doubt if he will be getting off of the sofa for the rest of the day.
Peggy

February 22, 2011

Casey's fever continued to hang around, so he is still in the hospital. He has now gone almost 24 hours without a fever.  If all goes as planned, they will do a bone marrow biopsy tomorrow and then release him.  We will not have the biopsy results for a couple of days, but that will dictate the next steps.  Hopefully this clinical trial drug has killed off all of the leukemia blasts and they can give him a mini transplant.  We all need to say our prayers and cross our fingers that this biopsy comes back clear. 
We are getting into championship season for Casey's swimmers.  He is so proud that every one of his senior team swimmers has qualified for districts. Way to go L.A.C.!
I also have to send kudos to Casey's friend Griff.  Griff's brother in law got to perform on stage at the grammy awards with Bob Dylan.  I think that is the best story I have heard all year.  Just 2 short years ago The Avett Brothers were performing in bars in Chapel Hill, and now they have perfomed on the grammys....and with Bob Dylan.  I had to watch the clip on the internet a couple of times.  The grammy's is one of my favorite shows.  I can't believe how star struck I am with the whole situation.  Not only does Griff personally know Big Bob, but he now also has a kinda famous brother in law.  I bet with all of his new found fame, Griff would still be willing to come up here and take Casey in for another round at the day hospital.
We will see what tomorrow brings.  I will keep you posted.
Peggy

February 19, 2011

Casey's fever is under control.  They have been giving  him IV antibiotics and monitoring him.  Thursday night his fever spiked and he broke into one of those sweats that left the sheets soaking wet.  They changed his bedding, and his fever has not gotten over 100 since then.  The nurse said if his fever stays under control he may be able to go home tomorrow.  He is not feeling fantastic, but that could be the chemo kicking in.  This particular drug makes you feel bad a couple of days after infusion instead of immediately.  He is complaining about the food, so you know he is not feeling too bad.  We just take things as they come, one day (and one meal) at a time.
Peggy

February 17, 2011

Casey's time at home was short lived.  Today he got a fever and has been admitted back into the hospital.  We spent most of the day in the E.R. until a room was ready for him.  They gave him IV fluids and antibiotics which seemed to have kept the fever at bay.  He was not feeling great when we left him tonight, but he was feeling much better than when we arrived this afternoon.  Hopefully we caught this early enough for his recovery to be quick and painless.
Peggy

February 16, 2011

I brought Casey home from the hospital today.  Annie and Bowie were so happy to see him.  Casey's counts are real low, so he will be under house arrest for the next several weeks.  He will be going to Hershey every other day to be monitored and get blood transfusions as needed.  Boy am I going to miss having Stevie around. 
He took the chemo real well, but the steroids have really kicked in.  He even ate the hospital food.  I went to Costco to fill the cupboards (and empty my wallet!). Keeping our finger crossed that the third time is a charm.
Thank you to everyone, and Thank you Betsy (or should I call you Dr. Betsy?)....I was thinking about you just today, and wondering where you were in your rotation.  You must have been reading my mind.
Peggy

February 12, 2011

Here we go again. 
Casey had a routine bone marrow biopsy last Thursday, and I was hoping to be able to post on the blog that everything is clear and fully engrafted.  Unfortunately that is not the case.  Leukemia blasts are in his marrow.  The good news is that they have not entered into his blood, so it has been caught very early.  In September they did a bone marrow biopsy and discovered a very small amount of blasts, so they reduced his anti rejection medicines in hopes that the new stem cells would kill them off.  This last biopsy showed the blasts have multiplied.  The course of action they have decided to take is a clinical trial.  Casey was admitted into the hospital on Thursday to begin another round of chemo, which he is tolerating very well.  He had another central line put in, so it is back to taping him up for showers and daily line flushing.  Upon his release from the hospital next week, he will be going up to Hershey every other day to have his blood counts monitored and more bone marrow biopsies.  His dark brown hair will probably all fall out.  We are wondering what color it might grow in the next time.
I will keep you posted.
Peggy